|Human kind cannot bear
very much reality.
The moment of truth
The relationship between the
doctor and the dying patient also includes the "moment of truth". This
is not always identical to the time of explanation. It can happen at any
time when the patient, without necessarily expressing it in words, wants
to know from his doctor how he is, and the doctor has to reply, again,
not necessarily in words. The Mainz Law Institute (1973) asked general
practitioners if they explained minor findings to their patients without
being asked, and found that 89.4% did this. However explanation of incurable,
progressive disease, was only carried out in 11.2%, and in the case of
malignant tumors, in only 8.9%. On the other hand, the doctor explained
the incurable disease to the spouse in 96.8% of cases. Hinton (1976) showed
that about 75% of these patients "know" that they are going to die. This
results in an insupportable as well as untruthful situation, which has
been so movingly described by Leo Tolstoy in "The death of Ivan Ilyich":
|What is truth?
18 v. 38)
"The major agony for Ivan
Ilyich was the lie - which, for whatever reason, was recognized by all;
that he was only ill, but would not die, and he must only remain calm,
and endure the treatment, in order that everything would be well again.
However he knew: we could do what we liked, nothing more would come of
it, apart from terrible suffering and death itself. The lie tortured him;
it distressed him dreadfully that nobody wanted to admit what they all
knew, and what he also knew, and that they wanted to force him to take
part in this dishonesty. The lie, this deception practiced on the eve of
his death; the lie which was to reduce the awful festival of his death
to the level of their visits, and the curtains, and having sturgeon for
lunch... this was awful, terrible, for Ivan Ilyich. And odd! Many times
whilst they were involving themselves in all this foolishness, he was at
a hair's breath of crying out: Stop lying, you know, and I know, that I
am dying! But he never had the courage to do it."
The proportion of people
who genuinely would like to know that they are incurably ill, can be found
only statistically, which means that the question in any individual case
would have to be answered anew. A recent study from the Hamburg-Mannheim
Foundation for Medical Information found that
59% of a representative sample expected their doctor to inform them fully
if they were suffering from an "incurable" or "fatal" disease. 14% of those
asked would not want to know the full truth. Men were more willing to accept
the full truth than women, as were younger people and those with a higher
educational level. The findings of such studies carried out in healthy
can only be extrapolated with extreme caution to those who are already
ill. Even when one presumes that these findings are basically applicable,
the major conclusion is that only a little more than half of all people
would really like to hear the whole truth.
The recurrent question: "Tell
the truth - yes or nor" is already incorrectly posed, and cannot be satisfactorily
answered in this form, that is with two alternative replies. The person
who answers "no" denies that the patient often knows, mostly however supposes,
what is happening to him. This supposition (sort of "pre-knowledge") can
have many roots: general explanations obtained from the media, death from
cancer in his own surroundings, the behaviour of the doctor and nursing
staff, or the treatment which has been recommended or already commenced.
The tendency to answer "no" to the question about telling the truth usually
arises from the personal anxieties of the doctor, and less from the opinion
that "...the commandment for truth, in competition with the commandment
for love" applies here (Martini). The doctor who says "no" puts the patient
who supposes or already knows, exactly into the situation of Ivan Ilyich.
If the question is answered with "yes",
then this yes becomes an unabridged affirmation with no "ifs" and "buts",
if one excludes the experience of the patient. "This overlooks" (according
to Adler and Hemmler), "the confrontation of the patient with the fact
that he is sick with cancer, that a process is taking place which has a
chronological progress, during which the patient progressively experiences
"things" in a different way depending on his own view of reality. There
is no "truth" which can be simply doled out. This kind of dealing with
the question excludes the patient." These considerations probably increase
the urgency of the question of how the doctor should behave at the moment
Firstly, there will usually be no single
"moment" of truth, "as it is probable that the explanation will be a prolonged
process, with variation in readiness to talk, which requires patience and
much personal involvement" (H.E. Bock).
The initial step is to find out by
discussion whether or not this patient in this stage of his
illness would even like an explanation. It should be remembered
that readiness of the patient to come to terms, perhaps only very
generally, with the true nature of his disease can vary from one
day to another. The doctor must herefore be prepared to wait for the favourable
moment which seems best for the explanatory discussion.
Unless there is an emergency
situation (i.e. emergency operation) which makes it necessary, the patient
should not be given this explanation at a time which seems right to the
but rather when the optimal readiness and ability to absorb it is to be
expected from the patient.
A further objective of the
explanatory discussion is to determine, as closely as possible, what the
patient has already guessed, what information he already has, and above
all, how extensively he really wants to be informed.
Explanations are best not
carried out in the evening, in order that the patient does not have
to deal helplessly with the full import of the truth during the night.
If the discussion is carried out in the morning, he has the rest of the
day in which to ask questions if he needs, and to get further information.
is that no patient should be informed about more than he himself wishes
The spectrum of truth
is very wide. On the one hand, truth can mean the confirmation of the supposition
that one has cancer, even though this is not put into words, and on the
other, precision right up to the histological diagnosis. Even if the patient
has been fully informed, his illness should be spoken about with great
care. The doctor can never be certain if the patient is, at that moment,
in a phase of denial and rebellion with flight into unrealistic ideas,
that is, in the extraordinary state of concurrently knowing and not knowing,
which often appears incomprehensible to the outsider. Devastating consequences
can follow an inconsiderate presentation of the "truth" in this sort of
The doctor must always be
aware that however carefully he formulates the truth, basically it is tremendous
and inconceivable: "I have to die, and nobody can save me." Accompanying
the patient through the last difficult stages of this life, being honest,
helping him to become prepared for death, all depend on major individual
variations in the degree of insight into the nature and significance of
What really matters, is not
the doctor's decision to "tell the truth" or to conceal it, but rather
his genuineness in his handling of the dying patient. Genuineness
means that he does not abandon him, that he determines to what extent the
patient wishes to and is able to rationally and emotionally accept his
illness, and that he does not allow himself to get involved in the dishonest
and poisonous atmosphere of lies, theatre and disappointments. Ideally
conversations between doctor and patient should become "a meeting between
two people, who speak to each other without fear or reserve".
Explanation should never
blow up all the protective mechanisms, dams and walls that one needs especially
when confronted with the approaching death. The protective covering of
hope, help and care must be maintained under all circumstances.
Explanations given to the
should not be radically different from those given to the patient, that
is, it should be kept to about the same level. Only in this way can the
family manage to continue a meaningful involvement in the care of the patient.
Asymmetry in the level of knowledge between the patient and relatives usually
means that the patient has to bear an even heavier load, which increases
his isolation and makes it impossible for genuine conversation. Involvement
of the relatives in care in the last stage of life of the patient is of
major importance. Only when a trusting relationship between the
patient and family has been established, is it possible to mobilize
all the sources of psychological support for the dying patient. However
even here one has to tread extremely carefully.
At this point it is important
to reiterate again, that the relatives are usually out of step with the
patient as regards the various stages of grieving. Therefore the doctor
must be prepared to recognize apparently incomprehensible, paradoxical
or aggressive reactions from the relatives. As with the anger arising during
the patient's denial phase, such attacks should not be taken personally,
but looked upon rather as reactions to the shattering knowledge that the
loss of a close relative is inevitably approaching. The more ready the
doctor is, not only to answer the often very urgent questions of the relatives,
but also to take the initiative to go to them and offer to discuss the
situation, the more likely affective mood swings can be kept within limits
and a trusting relationship established.
for explanation in the case of incurable disease
is more important than the "complete truth".
||Wait for right
existing knowledge and suppositions.
an explanation if the patient desires one.
||Do not explain
more than the patient wishes or can bear to hear.
give the same level of explanation to both patient and relatives.
Anxiety and its defense
The study of modern psycho-oncology
has shown that anxiety is one of the major psychological phenomena
of patients with malignant tumors. It acts rather like a signal function,
in that it makes clear the loss of physical and/or spiritual integrity
as a threatening or even present event. This anxiety contains all of the
previous preconceptions that are associated with the term "cancer": anxiety
about abandonment, social isolation, passive surrender, mutilating surgical
procedures, loss of autonomy and quality of life, fear of pain, insurability
and death. At the core of anxiety about death is anxiety about disintegration,
similar to that of "stepping over the cliff". This anxiety of the cancer
patient also has the function of mobilizing psychic resources which
aim to recreate the integrity of the person (F. Meerwein).
One of the most critical
responsibilities of the doctor is to recognize these anxieties and their
defense mechanisms, which can be completely concealed. He is more likely
to be confronted by the whole scale of defense mechanisms than by
the open admission: "I am anxious." These defense mechanisms allow the
patient not to face his anxieties helplessly. With them, he can obtain
some measure of control of his anxiety, although a certain amount
of uncontrolled (free floating anxiety) remains over. The duty of
the doctor is to recognize this free-floating anxiety, as well as the defense
mechanisms, and to assist the patient in the battle against these concerns
by involving him in the treatment plan. The following examples of the most
important defense mechanisms against anxiety are provided by F.
These examples of verbalization
of defense mechanisms clearly show on what dangerous ground
the therapist finds himself if he takes statements such as "I have no concerns
and am ready for anything" or "I have never felt so well, as since I have
been ill" at face value, not taking the psychological background into consideration.
This leads to the development of an atmosphere with a false sense of security
and freedom from anxiety, which prevents every real approach to the deepest
anxieties of the patient. It is here that the doctor's ability for active
listening is most important; listening to what is said and hearing the
"message behind the message".
have no anxiety, and am ready for anything."
illness itself does not make me worried. However I do get concerned about
taking the tablets. When I do occasionally become aware of anxiety, it
is the fault of the strong medication."
really don't want to discuss my illness and I avoid thinking about it;
I can cope best in this way."
with the aggressor:
culmination of everything bad that has been done to me in my life, is expressed
in my illness. I therefore now feel angry, and whip up anxiety in others."
wife is very worried about my condition. Please help her, as her anxiety
concerns me more than anything else."
know that there is a 15% risk of cancer in the other breast after breast
cancer is found in one. I suggest that you immediately remove the other
breast, so that I can regard myself as completely healed at last."
do not need any help, and can come to terms with my disease by myself.
Anyway, I can't depend on anyone else. Nobody is as capable as I myself."
in the opposite direction:
have never felt as good as I do since I have been ill. My life has become
more intense and my feelings more rich."
As denial is the most
common and most effective defense mechanism, this has been studied more
than any other. Weismann and Worden (1976/1977, quoted by F. Meerwein)
have found, for example, that out of 120 patients who had just been discovered
to have cancer and who were all thoroughly informed about the findings
and diagnosis, 10% maintained that they did not know the diagnosis 10 days
later. Had the phenomenon of denial not been recognized, the behaviour
of the patient would appear incomprehensible, and the occasional abrupt
leap from a state of "knowing" to "not knowing" would remain unexplained.
This phenomenon can even be seen on the same day, for example when a patient
says: "I won't be there the next Christmas" and shortly afterwards that
he would like to survive at least until his son is awarded his degree,
something which could only happen in 4 years at the earliest. This apparent
"double book-keeping" is one of the obvious characteristics of denial.
It is very important that
the doctor knows that many different forms of defense mechanisms arise,
almost without exception, in the case of patients with cancer. These should
not be destroyed as they create essential help for coping with an otherwise
almost insupportable reality.
Discussions with dying patients
are those with the greatest degree of difficulty. There is no other situation
in the relationship between doctor and patient during which words have
to be used with a greater care and economy. As is pointed out by the oncologist
Th.E. Brewin: "Say enough, but not too much."
A high degree of empathy
is required to choose the time, the topic and the extent of the conversation.
The doctor has to be able to assess, when and how long the patient in this
last phase of life, really wants to talk and about which subjects.
"How" is a more important
question to be answered in discussions with the dying and terminally ill
patients than "what". The genuineness of the conversation is of
utmost importance. There is no place for organized or routine interviews,
carried out behind a facade of professionalism.
The principle of complete
clarity of speech need only be followed to a limited extent in discussions
with these patients. Of course, discussions with the dying should be characterized
by openness and should provide an appropriate amount of information. However
this information should not be given at the cost of creating hopelessness
and horror. For instance, although the term "non-benign tissue" contains
almost the same information as "cancer cells", it is probably slightly
less shocking, in the same way that "time seems to be limited" is perhaps
easier to absorb than "approaching death".
Dying and death are shocking
enough, and are associated with major anxieties. It is therefore the responsibility
of the doctor not to induce additional anxiety during the course of such
discussions. This does not mean that the doctor has to use euphemisms exclusively.
However in discussions with those patients, who already have learnt a great
deal, it is probably unnecessary to use the term "cancer" again, as the
patient understands what the doctor means when he refers to "this illness".
The doctor can make it clear to his patient that he and his team will do
everything possible to alleviate the anticipated "complaints" as much as
possible, without mentioning "pain". Anxiety is created by the use of pathological
and anatomical terms, and these can be largely removed from the vocabulary.
It is still possible to speak openly with the patient without using the
terms "metastases" or "tumor cells". If the patient does want more details,
then "involvement" or "changes" in an organ provide as much detail as "liver
metastasis" or "bone marrow spread", to say nothing of such detailed descriptions
as "disseminated pulmonary tumor" or "obstructed gallduct" which can distress
the patient by their implications of post-mortem findings.
Drawing by a 59-year-old
cancer patient (highly malignant non-Hodgkin lymphoma) four days before
his death. When asked, he interpreted his drawing as follows: "This is
a cornfield in bloom with lots of cornflowers, and in the middle of it
there is the bench where I would like to rest at last...
It is certainly legitimate to
accentuate marginally relevant findings in the course of the disease, as,
for example, a temporary freedom from fever, normalization of laboratory
values, some weight gain etc. These are the material "upon which hope is
based". Even when there is unfavourable news, or deterioration has been
found, this should always be given with hope, for example, with the mention
of another patient in the same situation, in whom, be it even temporarily,
an obvious favourable development or regression of symptoms can be observed.
It is particularly important
that the doctor does not project his own impotency and helplessness
onto these terminally ill and dying patients in discussions about deterioration
or complications. It is especially important that the patient is repeatedly
reassured, from the moment of learning that he has incurable disease, that
insurability is not synonymous with "nothing more can be done". He should
instead know that there are many possibilities of help, and ways of reducing
symptoms, which relieve stress and give support, and that "everything possible
that people can do" will be available to him for his continuing care. A
picture of the future can also be helpful. It is probably more bearable
to hear that death is "still miles away" than statistics about life-span.
It is reported that Sauerbruch, when he was asked by the dying Hindenburg,
how close death was, answered: "Not yet in the room, your Excellency, but
he is stalking around the house."
If the patient does not want
to talk, either because he is exhausted or unable to speak for any other
reason, the doctor should accept this behaviour and "offer a second opportunity":
"Would you like me to come back later? ..." or "Would it be better if we
carried on talking tomorrow morning?". The patient then knows that his
present wish (not to be disturbed) is respected but that his doctor has
not deserted him. Even though the patient needs particular help, it is
the responsibility of the doctor to see that this very personal experience
of dying is not disturbed.
Active listening and
silences are of particular importance in this situation. It is often
sufficient not to contradict or to answer with silence, as this is answer
enough. Often non-verbal communication (in the form of gestures)
is better than talking to the dying. The closer the relationship between
the doctor and the patient in this last phase of life, the more they will
be able to communicate at the level of "wordless agreement".
Put in a nutshell, all of the
help given by a doctor to terminally ill and dying patients aims to help
the patient to find ways of coping with his situation. Even though the
knowledge of approaching death can be so incomprehensible and insupportable,
the patient has to finally find a way to "emotionally adjust" to his fate.
Ideally, it perhaps will be possible for him to "agree" to his death. It
is important that the doctor knows which factors encourage this process
The major findings of the
help and research programs of R.C. Cary (E. Kübler-Ross) have been
that emotional acceptance is most likely to be achieved in those:
whom physical symptoms are minimal,
||who have had
close contact with somebody who died peacefully,
||who are religiously
A higher educational level
also seems to be associated with an easier emotional acceptance. These
findings underline the particular importance of sufficient and continual
use of analgesics, especially of continuous rather than intermittent
analgesics, in order to avoid recurrent swings between painful and pain-free
periods. With this concept of therapy, the total dosage of analgesics is
in fact lower than when massive doses of analgesics are given as intervention
therapy, which still occurs.
We now know more about the
major anxieties of the dying patient. The most common is the concern
about being a burden to others, followed by the grief of being parted from
those who are close, only then followed by the thought of a painful death.
This means that the doctor must make sure that his patient knows that his
is not a burden, but rather a serious duty; that contact with
the family must be as close and generous as possible, and
finally the patient must be assured that even at the end, he will receive
protection against pain.
Care of terminally-ill and
dying patients means that the doctor himself will be involved in all details,
even when these seem irrelevant to an outsider. This attitude makes it
plain to the patient that even the "rest" of his life is taken completely
seriously, and that he is not being pushed aside and forgotten.
The freedom of dying patients
is severely curtailed. This occasionally insupportable loss of freedom
can be somewhat alleviated by removing as many barriers to freedom as possible.
In the first instance, this includes avoiding the whole range of incapacitation
strategies which can quickly take the upper hand, especially in hospitals.
In practice, this means that the patient must be involved in all medical
decisions within reasonable limits. He can agree with the introduction
of analgesics and sedation, as well as flexibility with regard to the timing,
sort and extent of various diagnostic measures, in order to maintain his
habits and previous life-style in as far as that is possible, and to decide
for himself on the contacts that he makes and the visits he receives.
Caring for a patient for whom
there is no longer any possibility of healing, calls for a high degree
of empathy, emotional involvement, readiness to converse, as well as the
ability to impart an understanding presence. However, do all of these efforts
have a real effect in view of the inevitable fatal outcome of the disease?
Certainly, according to conclusions from research and experience with dying
|They also serve who only
stand and wait...
The dignity of man, even
though this is very difficult to define, is always affected by disease,
especially during illness preceding death. Although health and healing
are the original, basic objectives of medical treatment, they are not the
ones. Where it is not longer possible to heal, and death is approaching,
in the "final major crisis of life", when all of the technique-medical
intervention per saldo no longer has any effect, it becomes clear just
how much a person depends on others. It is precisely this field where the
doctor experiences his greatest disappointments, but also his best successes,
even if they are not the most spectacular. If he knows what is of concern
to the patient and causing his behaviour, the doctor has a good chance
to support the insupportable and to make the unpleasant more pleasant.
Perhaps he will then experience the "miracle of the small gesture", with
empathy, discussion, and careful guidance. William Osler's biographer,
Harvey Cushing, described how he would visit his dying patients daily,
if not more often. He brought the last rose in his garden on a gloomy November
day to a girl who was dying from a fatal tumor, and in this way reconciled
her with death.
Under favourable conditions,
when enough time is left, and the doctor is really able to support the
patient and to guide him, and where it is possible to build up a trusting
relationship with the patient and his family, he is able to achieve something
like success if the patient achieves "readiness for death", which is acceptance
of the disease up to the point of death. Even though it seemed hopeless,
if this happens, it can be that one hears from the relatives after the
death that "the only one of the whole family who was strong was probably
the patient himself."
makes it clear that there is another opportunity for the doctor
who deals with terminally ill and dying patients, and that is to learn.
"The patients soon lose their initial shyness after I start to talk to
them, and it is not long before they share with me the incomprehensible
loneliness in which they find themselves. Strangers, whom we have never
met before, tell us about their concerns, their isolation, and their inability
to discuss their disease or death with their next-of-kin or closest relative.
They tend to express their anger about the doctors, who do not get down
to their level, over the minister, who only too often tries to comfort
them with the phrase "It is God's Will", and over their friends and relatives
who inevitably try to reassure: "Don't take it so to heart; it isn't as
bad as all that". We quickly learnt to identify with them, and we developed
an even greater sensibility to their needs and concerns. They taught us
a great deal about life and about death, and they were delighted that we
asked them to teach us."
Questions about the
meaning of life
The question about the meaning
of life as death draws near, is probably the most difficult question that
a patient can pose to his doctor. Should one attempt to answer it? Certainly,
broadly speaking, one should. Perhaps it is enough to stand by the patient
whilst he takes account, without judgement or any attempt to be helpful,
and to put in positive input based on one's knowledge of his personal life-story.
Viktor Frankl comments that
the question about meaning can also be posed from a completely different
standpoint: "Let us think about what we can do when the patient asks what
is the point of life. I doubt whether a doctor is in a position to answer.
The significance of life varies from person to person, from day to day
and from minute to minute. It therefore does not apply so much to the meaning
of life in general, but far more to that of one person at one particular
time ... As every single situation in daily life requires something of
the person, and creates problems which have to be solved, the question
about the meaning of life could be put in the opposite way. In the end,
the person should not ask what is the meaning of life, but try far more
to find out who it is that is asking. In a word: every person is questioned
by life; and he can only answer in as far as he accepts responsibility
Experience shows that many
patients who know that death is approaching are more likely to ask about
the process of dying and what comes after death, than the meaning of life
itself. If the patient does however ask about the meaning of life, he can
be answered by changing the question and returning it, allowing him to
answer the question: "What significance have I had in my life, that is,
for other people?" for himself. He will probably then find it out for himself,
as answers to this question are found in every life story and biography,
and show that there is no earthly existence bereft of meaning.
One case history
The concluding page of this
chapter takes the form of a case report, which is probably better at demonstrating
how the doctor, even if he has no more therapy to offer, still does not
need to face his dying patient with empty hands. I will admit that the
conditions were favourable in this particular case, as the previous relationship
was very good.
One of my patients, who had
been seeing me occasionally over many years because of mild asthmatic bronchitis,
consulted me, at the age of 57, about "tiredness in the last few months,
and some weight loss". It was obvious that she was not far from death even
as she entered the examination room. Clinical examination suggested extensive
intra-abdominal tumor spread, with liver metastases and ascetics. Even
during the examination, the patient begged me to be "honest", because there
was probably some serious reason for her tiredness. I replied that I could
not exclude the possibility of this, and suggested a short period of further
investigation in hospital. She was found to have a carcinoma of the sigma
colon, which was not stenosed, and extensive liver metastases and ascetics,
along with many pulmonary and bone metastases. The findings were discussed
together with the patient and the husband, a dentist.
The patient begged me to
give me a true answer to the question "Have I got cancer?". I admitted
it, but later it was referred to in all conversations only as the "illness"
or "disease process". At this initial conversation, we did not discuss
the various possibilities of therapy or the likely outcome. I suggested
that the couple should make an appointment in the next few days when they
were ready to discuss therapy and prognosis. In the meantime, I could be
contacted by telephone at any time. Two days later the couple requested
an appointment. It seemed as if the phase of rebellion was short, and the
only signs of it were that the couple had consulted a homeopathic doctor,
as well as asking a surgeon, who was a friend of the family, to talk to
me by phone.
During the discussion about
possible therapy, I broadly explained that chemotherapy would produce "a
certain chance of suppressing the disease process". We also discussed a
prophylactic colostomy. The couple asked for more time to think about this.
At the next appointment,
the patient asked if the treatment could possibly be delayed by a couple
of weeks. If it could, she and her husband would spend a fortnight together
by the sea. I agreed, that this would be a good thing, and assured her
that I could be reached by phone at any time during her holiday, and would
be available to discuss any questions, but especially to help if there
were any new symptoms.
The patient did phone be
shortly before the end of the holiday, to say that this had been the "best
holiday she had for years with her husband", and she had not been upset
by poor appetite or tiredness. She wanted to know if she could extend this
holiday by another week, to which I agreed.
After the holiday, the patient
asked me if in my honest opinion, the treatment was in fact "definitely
necessary". It was true that she had some pelvic pain, but this could possibly
be controlled at home with the use of pain-killers. In view of the extensive
nature of the disease, I agreed to this treatment, and we worked out together
a specific plan for treatment with oral analgesics which would provide
After a fortnight, the patient
returned and said that she was managing very well with the analgesics.
I had been visited the previous day by the husband, who admitted that he
was terribly upset by his wife's illness, but that he believed that she
was best at home, provided she received these continuous pain-killers.
A few days later, she was
brought to out-patients, and reported that although the pain was worse,
she could "live" with it provided she took analgesics regularly. She also
said, with great calmness, which is characteristic of this phase, "everybody
is crying apart from me". She died a day later at home, as the result of
a fulminating pulmonary embolus.
Geisler: Doctor and patient - a partnership through dialogue
Pharma Verlag Frankfurt/Germany, 1991
of this page: http://www.linus-geisler.de/dp/dp30_dying.html